We have had concerns about SS's CNS since we met her but our concerns have been dismissed. You know, the perception that since we are older parents we are hyper vigilant. Gee, like it's such a bad thing to be proactive. Bottom line is that SS is very uncoordinated, and still uses a straw to drink not because we want to impede her becoming a big girl, but because she still chokes on liquids. SS has difficulty chewing and swallowing. We worry because she still can't pedal, and because bruises on her legs and Bandaids are normal, since she is always tripping. SS's balance is definitely off.
Since the consult was scheduled on my day off P felt OK not taking the time off. But a couple of days before the appointment the butterflies in my stomach would not leave me alone. I asked him to please join us, and we are thankful he has a job were taking time with such short notice is not a problem. I have been around the adoption boards long enough to know what to expect at different consults. When JJ had his neuro consult an EEG was a must. I knew the Dr. would most likely request one for SS. That's an easy one, because all one has to do to prepare is make sure to keep the child awake as late as possible, with the hope they will sleep during the test.
Now it is becoming more common for Dr.'s to order an MRI. Yikes, I have had so many of those, and I hated each and every one of them. Being still for 45 minutes is difficult for any adult, let alone a child. But I took P's advise and since I was anxious about the consult, well, I shelved the MRI concern for when that bridge presented itself.
SS was not a happy camper and her demeanor completely changed as soon as we entered the examination room. She just would not buy that it would not be a painful consult. Dr. A is very soft spoken, and thankfully a child neurologist. The first thing he did was address SS's fear, explaining that he was a fun doctor, not a shot to be had in his office, and no pain. He had read whatever history we could provide, but what he really needed, specific birth history (forceps, vaginal, c-section) that we could not provide. But he at least had enough to understand our concerns, and not once did he dismissed us as hyper vigilant.
SS actually laughed through the reflex testing, and Dr. A seemed satisfied with her visual tracking. When it came to balance we knew we had a problem. SS did not hop until very late, let alone on one foot. She managed to do it, but with difficulty. Then SS was asked to tandem gait, the famous field sobriety test. It's where the toes of the back foot touch the heel of the front foot at each step. I mentally kicked myself for not asking SS to try that before. I also wondered why Dr. S and Dr. B never asked during their many exams with SS. Our girl flunked and miserably, she cannot get her feet so close together. When P helped her get the feet positioned properly, it resulted on SS losing balance. Good thing Dr. A was expecting just that and she did not hit the tile floor.
SS needs to have an MRI, the doctor won't even bother with the EEG. We know that there's no way SS can endure the MRI without sedation. Then there's the noise, SS has issues with noise and that machine noise level even disturbs me, and I don't have SS's issues. Dr. A warned us that the possibility of general anesthesia is greater than sedation. OK, now we do have a problem. We are not sure that we want SS under general. She is too small, and we are not sure we want to risk the possible negative consequences. We have not talked much about this yet, because Dr. A blindsided us with a second concern. That concern was a kick in the gut for both of us. We left the office with an order for am MRI and also for blood work (no surprise there), and for a karyotype.
That request kicked me in the gut much harder that it impacted P's. I'm the worrier in this relationship, the one running through all the what ifs, and a karyotype was nowhere near my radar. I was so glad P was with me, because my mind just went blank for a moment. We are not going to discuss the concern because we need to wrap our brains around it first. Other than us and JJ, only two other people know. We are human, and each turned to a trusted person to vent. Maybe when we get the results we might share, but as I'm typing here, not sure either one of us would want to now or in the future. Not everything in SS's life is fodder for the blog.
Bottom line is that those sixteen months at the SWI will forever define our baby's health and development. No matter that SS received excellent health care at home, that we have done our best trying to feed her properly, that we gave up a much needed second income, so SS could have one on one care. It really doesn't matter that as difficult as it was financially SS attended preschool, to fill the gaps that one on one time with her Mama could not cover (such as socialization). It doesn't matter that we chose karate and soccer hoping that it would help her coordination. None of that matters, because the effects of sixteen months of malnutrition are irreversible. SS's premature birth does not help matters. She came into this world with a not yet developed neurological system. Yes, all kids come into the world not completely cooked. But unlike full term babies, SS was really far from cooked. That is not what did her in, it was the malnutrition.
I decided to go to work and put in five hours of mindless rote work to work through what I was feeling. Anger, I thought sadness would win out, but no, anger was what fueled me for five hours. Angry that our baby was held for sixteen months when she was targeted for international adoption when she arrived at the SWI. Angry that she only had 24 ounces of formula as her sole sustenance at sixteen months. Anger that SS did not know what a rattle was, and could not hold on to one when we met. Anger that SS was not walking when we met and it was due to her malnutrition. Anger about anything and everything that happened those sixteen months that led us to that consult, and Dr. A's concerns. Just plain angry.
Dr. A did say something that while said to make us feel better, does not negate its truth. He told us that upon reading about SS's birth and time in China, he was not expecting what he saw when he walked in the examination room. Dr. A was not expecting to see as well behaved, calm (kids with neuro issues are constant motion types), healthy child. A child who pretty much missed kinder and yet is keeping up in a regular education class. Dr. A was expecting a much lesser level of functioning. He said it was due to the excellent care we have provided, but we beg to differ. We know that SS's level of functioning is due to SS, to her incredible spirit, her uncanny ability to survive, not only that, but to thrive. And as angry as I am about everything I ranted in my mind about, SS would not be such a remarkable child without the road that brought her home, her forever home.
So what's next? We should get a phone call in 2-3 weeks to schedule the MRI. Yesterday a good friend asked me why wait so long? Let's get this done, and I get where she's coming from. because right now she is as scared as we are and praying for our girl. We are OK waiting because the outcome of the MRI has already been decided. Whatever is there is there, and all we are going to do is learn to live with it, to control it, to monitor changes, and to get SS the help she needs. The same goes for the karyotype, her chromosomes are there and nothing is going to change how they look. Trying to make us feel better once again Dr. A said he wanted the karyotype because there is so much we do not know about SS's birth. True, and that is the case with 99% of kids adopted from China. I hang around those boards enough to know that karyotypes are not ordered for all. This is not our first rodeo, and we know he has valid concerns.
SS has a birthday coming and if we can save unpleasant things until then we are OK with waiting. We want SS to enjoy her week in Maui, although we know she'll be upset about the homework we are taking. P and I also need to discuss the sedation vs. general anesthesia issue. The bottom line will be what is in SS's best interest and we are the only ones equipped to make that decision. At least SS will be in a hospital for the MRI, and that is much different than when her dentist wanted to put her under. Anything can happen anywhere, and we did not feel the dentist's office could deal with an emergency situation, so we opted out. P has already made the point that in a hospital SS is assured a faster response and better care. I completely agree with him, but not ready to say just go ahead with general.
Dr. A is reccomending speech, physical and occupational therapy. He was happy to hear that speech therapy is alrady happening. He told us that the school district has a legal obligation to accommodate SS. That we knew, but we also know what a tough road that is. Dr. A stated that the schools respond well to a letter form a neurologist. We guess there is hope there. Plus SS has three adults at home fighting for her. I am not doing this alone, like I did with JJ. We can lean on each other.
And for the record, knowing what we know now, worrying about what we are worrying about now... We would do it all over again, and without regrets. Because in the middle of this we had to admit that we have not closed that door, the one that might lead to more heartache and worries.
And up we go! All the way to the second floor.
A screenshot of P's Weather Channel app. He texted it to me at work to cheer me up. It worked.
I made it home just in time to grab SS and drive to archery class. The coach was uncharacteristically late and SS was really upset at the prospect of missing class. Six year olds are not known for consistency, and it makes us glad that SS still enjoys this class, and we hope she sticks with it a while longer. SS's target was moved closer to accommodate for her not wearing glasses. That very expensive frame is cheap. P had just adjusted the temples the night before, but not only were they lose, they were crooked, making it difficult for SS to wear them and aim. SS was THRILLED to pop a balloon.